Disturbing: Quackery on Kids

[Hydrogen Cyanide]

My oldest kid has a severe speech disorder (which may or may not be related to a history of seizures). When he was younger I did lots of research in the library about it... along with research into normal childhood developement.

When we got on the internet I found a Compuserve forum that kind of served my needs for coherent information. Through that forum I became part of a listserv for his disability... and then did some forays into usenet groups (usually through Altavista, then deja.com, and now http://groups.google.com ).

In the beginning of the on-line quest for information I found very sincere interested folks looking at good scientific reasons and treatments.

BUT... now I am finding a disturbing trend.

First it is the over-all willingness to blame standard medical practices for the child's disabilities. Then to go towards odd and sometimes frightening treatments.

The Doman-Delcato patterning bit seems to have gone out of favor (helped perhaps by the book No Time for Jello by B. Bratt). Cranial Sacral therapy hit a high point... and now seems to be receding (I usually ask the parent how a head massage helps when the neurological damage is at least an inch under the skull... plus the BC Health study that was posted on NCAHF, http://www.ncahf.org/digest/01-33.html ).

Then there are the oil supplements... which come and go, with various "speech diet" variations. I have been asked if I used them on my kid... but I reply that they are NOT recommended for kids with a history of seizures.

BUT... what has really got me disturbed is the increasing use of "oral chelation" to treat a supposed "mercury" poisoning that these folks claim caused the disorder after normal childhood vaccination.

This is really nasty stuff... and some posts placed by parents who claim it is 'helping' describe some really bad side effects on these kids.

Yet when I do a www.google.com search on "chelation" and "children" I get a hundreds of sites promoting it as a "cure" for whatever developmental disability a child may (or may not) have. These hucksters use all sorts of distortions and mis-truths to get folks to buy their pills to put into kids.

Yet... I see nothing on the normal Quackery websites.

I look up "chelation" on www.quackwatch.com, www.healthwatcher.net, www.healthwatch-uk.org and www.healthfactandfears.org... and all I get is that chelation for heart disease is a scam. Nothing on parents being scammed to try it out on their kids.

Am I the only one this bugs?

[jj]

Originally posted by Hydrogen Cyanide
BUT... what has really got me disturbed is the increasing use of "oral chelation" to treat a supposed "mercury" poisoning that these folks claim caused the disorder after normal childhood vaccination.


Off to Fumento with them!

This sounds like an offshoot of the "mercury poisoning" scare that hit the dental world a few years ago.

I have little to offer. I've worked a bit with people who had hearing problems that related to speech defects, but not as a speech therapist so I fear I have little to offer in terms of real advice, but at least I know that.

I can't help but wonder why so many people fall for this anti-vaccination propaganda and all of its fearmongering offshoots.

[Hydrogen Cyanide]

Yes, I think it is an offshoot of the anti-filling group. It is also combined with the general anti-vacc bit.

Usually if a person who is more scientifically centered or skeptical posts that the cranialsacral, oil-supplement, chelation stuff is a sham. Their email box gets full of all sorts of vitriolic stuff accusing them of having a closed mind or being in cahoots with the medical establishment. I had one tell me as-a-matter-of-fact that vaccinations cause cerebral palsy!

I usually will continue to post that the progress my son has made from being totally non-verbal with only a sign-language vocabulary is due to hard work with several good (and I mean GOOD!) speech therapists. Of course it was at least 8 years of speech therapy... which is not the miracle cure folks want to hear.

What I find mind-boggling is that folks who think the pharmaceutical conspiracy to vaccinate kids will resort to pushing nasty chelators into their kids!

[Goshawk]

Am I the only one this bugs?

My guess would be that you're just ahead of the crowd, due to your personal interest in the subject. Give it time, and especially give the media time to glom onto it and start featuring it in places like Parade magazine.





And I, too, am disturbed by statements like this one, in the pretty-much-mainstream About.com site:

http://autism.about.com/library/weekly/aa010901a.htm

Due to the nature of DMSA, however, it does not simply bind to lead, but to any heavy metal, and therefore will bind to mercury, such as has accumulated due to vaccinations containing thimerosal. [bolding mine] I am not aware of any empirical evidence showing that mercury accumulates due to vaccinations. All I can find is that the FDA decided to call for reduced use of thimerosal in vaccines because it seemed "prudent", not that they had any data indicating that it does in fact accumulate to dangerous levels. I would think that if they did have such data, they'd have published it.

http://www.fda.gov/cber/vaccine/thimerosal.htm

[kookbreaker]

How much Thimerosal is in my contact lens solution? With the amount I've used I expect to give babies defects at 100 yards.

[Boo]

Hydrogen,

When my son was diagnosed with CP people were standing in line asking when would we sue the Dr's and midwife that saved not only my life, but the life of my daughter as well. Puhleeze.

I know exactly what you are going through. The twins have Autism and at last count there are over 1,500 suspected causes and treatments. The Autism society takes the stand that if your child has been 'cured' of Autism, then they didn't have Autism. They most likely had a disorder with symptoms similar to autism. It's not called a spectrum disorder without reason.

Try to remember that there are many people out there that are unwilling or unable to come to terms with their children's diagnosis. They will always be looking for the great miracle cure and some quack will always be there ready, willing and able to take all of their money for the hope of a cure. We can try to educate them, but if they won't accept the reality........and they will tell you that while YOU may have given up hope, they haven't.




Boo

[Hydrogen Cyanide]

Originally posted by kookbreaker
How much Thimerosal is in my contact lens solution? With the amount I've used I expect to give babies defects at 100 yards.

HA! The eye guy who did my contacts informed me that I was allergic to the stuff when it was causing bits of my eye surface to dye and fall off. I basically quit contact lenses (added to the fact that I needed the weighted toric lenses which were a pain to use anyway... three cheers for Veralux!!).

The amount of thimerosal in the total number of vaccines was minor compared to what was in those bottles. And the 'evil' MMR never even contained the stuff to begin with.

[Hydrogen Cyanide]

Originally posted by Goshawk


My guess would be that you're just ahead of the crowd, due to your personal interest in the subject. Give it time, and especially give the media time to glom onto it and start featuring it in places like Parade magazine.

Oh good... that paragon of "critical thinking". Even when it had articles by Carl Sagan there were the periodic features about numerology. And now Sagan is dead. sigh


Originally posted by Goshawk


And I, too, am disturbed by statements like this one, in the pretty-much-mainstream About.com site:

http://autism.about.com/library/weekly/aa010901a.htm

I am not aware of any empirical evidence showing that mercury accumulates due to vaccinations. All I can find is that the FDA decided to call for reduced use of thimerosal in vaccines because it seemed "prudent", not that they had any data indicating that it does in fact accumulate to dangerous levels. I would think that if they did have such data, they'd have published it.

http://www.fda.gov/cber/vaccine/thimerosal.htm



My understanding is that it is the WRONG kind of mercury.

Oh my word!! Did I muck things up when I used to roll the mercury on my hand when a thermometer broke in my hand?!!

I don't think so (there is a concern that the disability may have been caused my seizures BEFORE any vaccination... which may have been part of a very long labor... possibly due to his very large head --- just think, if he had been born 70 years earlier both of us would have been dead).

[Hydrogen Cyanide]

Originally posted by Boo
Hydrogen,

When my son was diagnosed with CP people were standing in line asking when would we sue the Dr's and midwife that saved not only my life, but the life of my daughter as well. Puhleeze.


I had a long and difficult labor with this kid. I suspect that we would have both died at some point were it not for the doctor... the same doctor who 27 months later referred us to a good SLP. He did NOT take the typical (for that time) attitude of "wait and see" for late talking kids.

Originally posted by Boo

I know exactly what you are going through. The twins have Autism and at last count there are over 1,500 suspected causes and treatments. The Autism society takes the stand that if your child has been 'cured' of Autism, then they didn't have Autism. They most likely had a disorder with symptoms similar to autism. It's not called a spectrum disorder without reason.


Thanks... sometimes I feel (like some few others) that we are a voice in the wilderness saying "It just happens... there are no miracles!!".

I have never given up hope. I have found (and been luckily led to by good folks) to some GREAT therapists and educational programs that have helped my child more than my hubby can believe (I have a bit more confidence in my kid than hubby, but he can be a bit demanding). I know it takes WORK, WORK and more WORK. I have done the hours in observation rooms during therapy... plus the general chauffeur work.

Our second son also had some language delays. When I was pregnant with our 3rd kid I got this from the child neurologist: "Your kids' problems may be of a genetic origin". I was more than delighted when the amnio showed #3 was a girl (whose test scores show as a 3rd grader she may be gifted... but I'm not going to tell her, I want her to be "normal", plus I am not really fond of the teacher in school for the high achieving kids).

There was one point I was taking the two boys to a total of 5 speech therapy sessions a week (2/week private for #1 child --- plus what he got in his developmental preschool, PLUS 2/week private for #2 child AND the 1/week session he got at public school's SLP while he attended private preschool).

Fortunately #2 kid tested normal by the time he went to kindergarten. He had some language delays from kindergarten to 3rd grade... but has advanced well into high normal in 6th grade... AND has been nominated to honors math for 7th grade.

Sounds like it validates Thomas Sowell and his diatribe against public school and their therapists with "Late Talking Children"... doesn't it? HA!! I doubt #2 son would have done so well without early intervention (which Sowell's son also got). Plus... #1 son was speech DISABLED... not merely "late-talking". He still needs lots of work, and work and more work. But there is always hope.

Originally posted by Boo

Try to remember that there are many people out there that are unwilling or unable to come to terms with their children's diagnosis. They will always be looking for the great miracle cure and some quack will always be there ready, willing and able to take all of their money for the hope of a cure. We can try to educate them, but if they won't accept the reality........and they will tell you that while YOU may have given up hope, they haven't.


And that is what brings the scavengers out from under the rock. They seen these parents and prey on their quest for miracles. It distresses me are all the hucksters so willing to seperate the parents from their money. sigh

But there is only so much you can do. Be a cynic... be skeptical.. HEY!! I even researched the why's and wherefore's of the tubes they put in the kid's ear after several ear infections. But the difference was I went to the Resource Center of Children's Hospital, not some strange magazine article or the Internet. It also helps that our family doc is cheap. He is willing to call the procedures of other medical docs "walletectomies".

[jj]

Well, yeah, it does irk me, but I think you already gathered that.

I suppose I've been lucky. I'm hideously dysgraphic (i.e. reversals, misspellings, etc, in handwriting, which itself is pretty much hopeless) but I've learned to cope via typing. The computer always puts the 'b' the right way and moves the right way across the paper, and that is all it takes. For some reason, the keyboard breaks symmetry problems, I've only a few times swapped hands when typing (i.e. typed gissw instead of hello).

What bugs me is people who haven't a clue providing diagnoses.

One of my kids is similar. I've been told she doesn't understand math because she "doesn't calculate well" but does fine (read board to tears) in pre-algebra... We're working that one now. The problem? Getting lost due to bad handwriting, bad columnation, reversing numbers (i.e. 2 - 5, and 9 - 6 ) and reversing digits ( 19 for 91...). Sigh, we had this under control at her previous school, who figured out she belonged in one remedial class and the rest advanced. Here they still insist that it's all "one thing"... Blah.

Ironically because she's having to compensate, and CONCENTRATE and work, she's presently getting her best grades in language skills. Maybe when she gets into some real math she'll get more interested. (how may single-variable equations of the form a* (x +b) +c = d can you solve without getting bored, where 'x' is the only variable?) The teacher went moderately no-va when she wrote down the general case and started to use it as a formula, too.

But I think it helps she has a dad who gets it and who can teach coping mechanisms... I guess I'll just teach the math, too. Shrug.

In your case, it's a lot harder, and I hope you find a good, scientific therapist, one who can tell when they are succeeding, and what methods are working in each given case. And, again, yes it does bug the (*&(* out of me to hear that kind of crap.

Same deal with ours "well, was she sick when she was a baby? Maybe it was her shots". The problems, though, are ultimately much smaller in our case.

[jj]

Originally posted by Hydrogen Cyanide
And that is what brings the scavengers out from under the rock. They seen these parents and prey on their quest for miracles. It distresses me are all the hucksters so willing to seperate the parents from their money. sigh


Scavengers have a place in a society.

These people are not scavengers, they are cheap, disgusting opportunists out to make a buck on others' ignorance. I suspect the phrase "cheap, disgusting opportunists" sums up my position, though. :)

[Hydrogen Cyanide]

Originally posted by jj
...One of my kids is similar. I've been told she doesn't understand math because she "doesn't calculate well" but does fine (read board to tears) in pre-algebra... We're working that one now. The problem? Getting lost due to bad handwriting, bad columnation, reversing numbers (i.e. 2 - 5, and 9 - 6 ) and reversing digits ( 19 for 91...). Sigh, we had this under control at her previous school, who figured out she belonged in one remedial class and the rest advanced. Here they still insist that it's all "one thing"... Blah. ...

Oh, what an interesting coincident!

I had that too!! In the 6th grade I had a deplorable teacher who seemed to think math was how fast you could do a page of 100 sums or products. I cannot write fast... so I never finished them.

BUT... I was bored in math, so I read ahead in the book.

Fortunately, the next year we moved to a new town (one that was right near the headquarters of CDC... and near where Seymour Cray was from --- he and my mother were from the same home town). For 7th grade I got self-paced math. I blitzed throuh the calculation thing (at home, no timed tests) and finished halfway through 8th grade math.

So by the time we moved again I was able to start 9th grade algebra in 8th grade. One of the things that allowed me to get out of high school early.

Oddly enough... #2 child is doing the same thing. Last year they did not let him into honors math because his ITBS scores for arithmetic calculations dragged his total math from spectacular to just above average. Now that he is going into 7th grade the boring obnoxious "how well can you emulate a calculator" is no longer as important as "how well do you understand the concepts".

As my structures analysis professor used to say "I am a mathematician, not a calculator!".

Also... about that remedial bit: My brother was in remedial classes when we were in South Carolina. My dad even moved him out of the public school when the teacher refused to stop counting only 48 states in 1962, because the books they had ONLY had 48 states listed. But the parochial school my brother went was just as bad... so when we moved to California he was still in the remedial classes.

It took only about a month or so (we moved just the week before Christmas, so there was a holiday break) before the Pacific Grove public junior high staff realized my brother did not belong in that class, and moved him to regular ed. The fun thing was that he kept as friends all the kids in the remedial class (as close you can get to bad boys in the early 60's in Monterey).

By the way, we have been fortunate with access to great therapists. Through Children's (though this was a LONG time ago, there was a BIG shake-up about 10 years ago), the Scottish Rite, the school district, the Learning and Language Clinic (or is it the Language and Learning Clinic, those both exist, one on the east side of the lake, the other near Northgate) and a clinic at the Univ. of Washington (where we got to interact with one of the premier researchers in neuro-based oral motor speech disabilities, until she left for the Mayo Clinic in Minnesota).

Also our family doctor referred to a pretty good child neurologist. That helped with the insurance.

One should avoind many of the "know-nothings"... there is GOOD information available. All you have to do is know where to look. Unfortunately the Internet Dreck almost drowns out the voices of reason.

[Hydrogen Cyanide]

Originally posted by jj


Scavengers have a place in a society.

These people are not scavengers, they are cheap, disgusting opportunists out to make a buck on others' ignorance. I suspect the phrase "cheap, disgusting opportunists" sums up my position, though. :)

I apologize to all scavengers. Without them the road kill would suffocate us (I saw a dead raccoon recently). And vultures do look beautiful in flight as they catch the thermals.

I like your position on the cheap, disgusting opportunists.

[Dr. Popalot]

Hydrogen Cynide asks"Am I the only one this bothers?"

No, about a year ago I began to receive some promotional material at my clinc for this oral chelation stuff. Upon further investigation I discovered that most of it was coming out of Florida Scientologist businesses. Most of the "proof" they were offering was testimonials, and bogus stool tests. Scientologists seem to get involved in this type of baloney a lot. They are mostly preying on people that little hope in conventional medicine and "need" an alternative/hope.

[edthedoc]

Boo and H Cyanide: your favourable comments about your delivery experiences are a breath of fresh air: all too common is the attitude that there must always be someone to blame.

A slightly different slant to this thread is the general lack of evidence of the effects of most prescription medicines on children: most medicines that are licenced for use in children have never really been tested on children because of the ethics of consent i.e. it ain't easy to involve children in clinical trials.

The evidence used is usually from adult trials that are extrapolated to children but children do not have the same physiology or biochemical make-up of adults and a comparison is not always valid.

This isn't an easy problem to overcome but us doctors must be more open in acknowledging that this problem exists.

However, I'm even more concerned about the use of quack remedies and especially herbal remedies in children where there is often very little evidence of benefit and harm in adults.

[Dragonrock]

Originally posted by edthedoc
A slightly different slant to this thread is the general lack of evidence of the effects of most prescription medicines on children: most medicines that are licenced for use in children have never really been tested on children because of the ethics of consent i.e. it ain't easy to involve children in clinical trials.

The evidence used is usually from adult trials that are extrapolated to children but children do not have the same physiology or biochemical make-up of adults and a comparison is not always valid.

Last semester I took nutrition and the instructor repeated several times that children are not small adults. She had to explain that children have different requirements of almost all nutrients including a higher requirement of fat. Several students spent the rest of the semester complaining amongst themselves that she shouldn't be teaching because she doesn't know what she's talking about.

The thought of children as small adults is so engrained in some people that they refuse to even contemplate the concept that children are almost a different creature.

[Hydrogen Cyanide]

Originally posted by edthedoc
...The evidence used is usually from adult trials that are extrapolated to children but children do not have the same physiology or biochemical make-up of adults and a comparison is not always valid.

This isn't an easy problem to overcome but us doctors must be more open in acknowledging that this problem exists.

However, I'm even more concerned about the use of quack remedies and especially herbal remedies in children where there is often very little evidence of benefit and harm in adults.

I was warned that the phenobarbitol my son was prescribed would turn him hyper... even though it makes adults sleepy. That may have contributed to his more fussy moments, since as he was weaned off he tended to become a more calm and sweet child (his terrible twos lasted one week).

I am baffled that folks who would shun the EEVIL conventional meds would gravitate toward herbal things. Especially those formulations which are not properly controlled (like the ones that turn out to HAVE actual pharmeceutical meds in them!!... or other odd contaminents).

[reprise]

Originally posted by Dr. Popalot
Hydrogen Cynide asks"Am I the only one this bothers?"

No, about a year ago I began to receive some promotional material at my clinc for this oral chelation stuff. Upon further investigation I discovered that most of it was coming out of Florida Scientologist businesses. Most of the "proof" they were offering was testimonials, and bogus stool tests. Scientologists seem to get involved in this type of baloney a lot. They are mostly preying on people that little hope in conventional medicine and "need" an alternative/hope.

As a former Scientologist, I'd be extremely interested in finding out more about what they are pushing now. Was there by any chance a website listed on this promotional material?

[Quasi]

Originally posted by edthedoc

A slightly different slant to this thread is the general lack of evidence of the effects of most prescription medicines on children: most medicines that are licenced for use in children have never really been tested on children because of the ethics of consent i.e. it ain't easy to involve children in clinical trials.

The evidence used is usually from adult trials that are extrapolated to children but children do not have the same physiology or biochemical make-up of adults and a comparison is not always valid.



A year or two ago the Wall Street Journal had an expose on this. Apparently many biotech firms patents are running out, and sometimes their current research fails, even as far along as Phase III clinical trials (300 million down the drain!) So they reapply for the patent on the old drug and list it under "childrens medication" The company then gets perhaps an additional 15-20 years on their patent on the drug. This is not to say that the drug is dangerous or ineffective in children, but as with any area where large sums of money are involved, caution caution caution.